WASHINGTON--The results of a new study from the Christopher
& Dana Reeve Foundation show there are nearly 1 in 50 Americans
living with paralysis, almost 40 percent higher than previous
estimates. The study, which surveyed more than 33,000 households,
also shows more than five times the number of people living with
spinal cord injury than previously thought.
Specifically, the survey shows that 1.275 million have had a spinal
cord injury and over 5.6 million Americans live with some form of
paralysis. The highest previous estimates were 250,000 and roughly
4 million, respectively.
The study was conducted by the University of New Mexico's Center
for Development and Disability. More than 30 experts from 14
leading universities and medical centers and the U.S. Centers for
Disease Control and Prevention set the parameters for the survey.
The development of the survey, acquisition and analysis of the data
took over three years.
"This is the first population-based survey to measure the national
prevalence of paralysis," said Anthony Cahill, Ph.D., principal
investigator for the study and director of the Division of
Disability and Health Policy at the University of New Mexico's
School of Medicine. "The enormous data set offers a wealth of
information about this population."
Major findings of the study show:
--Paralysis is dramatically more widespread than previously
thought. Approximately 1.9 percent of the U.S. population, or
5,596,000 people, reported they were living with some form of
paralysis, defined by the study as a central nervous system
disorder resulting in difficulty or inability to move the upper or
lower extremities. This is about 40 percent more Americans living
with paralysis than previously estimated (~4 million).
--Spinal cord injury is also more prevalent than previously
estimated. Data indicate that 1,275,000 people in the United States
are living with spinal cord injury--more than five times the number
of Americans previously estimated in 2008 (255,702).
--The leading cause of paralysis was stroke (29 percent), followed
by spinal cord injury (23 percent) and multiple sclerosis (17
percent).
--Paralysis appears to be disproportionately distributed among some
minority communities such as African Americans and Native
Americans, but not all. Hispanics who are living with paralysis
represent approximately the same percentage as those who report
being Hispanic in the U.S. census.
--Household income for those with paralysis is heavily skewed
towards lower-income brackets and is significantly lower than
household income for the country as a whole. Roughly 25 percent of
households with a person who is paralyzed earn less than $10,000
per year, compared with only 7 percent of households in the general
population.
According to Dr. Edwin Trevathan, director of the CDC's National
Center on Birth Defects and Developmental Disabilities, the study
is a “crucial first step to providing appropriate public
health supports for this community in understanding how many people
live with the condition, who they are, and what they
need.”
"The health care system is often penny-wise and pound-foolish,"
added the Reeve Foundation’s Joseph Canose, who directed the
project. "For example, many health insurance companies will not pay
for a $400 wheelchair seat cushion, but they will pay $75,000 to
$100,000 to treat the pressure sores caused by the wrong cushion.
The more we can do to help people live independently--to get an
education, to work and to live fulfilling lives--the more our
entire society benefits."
Last month, President Obama signed the Christopher and Dana Reeve Paralysis Act into law. The legislation promotes collaborative research, rehabilitation and quality-of-life initiatives for Americans living with paralysis and spinal cord injuries.
